Privacy Policy

This is the main privacy policy for parkinsonslife.eu – which is provided for and controlled by the European Parkinson’s Disease Association “EPDA”. Parkinson’s Life and the European Parkinson’s Disease Association “EPDA” (“we, “our” or “us”) are committed to respecting and keeping safe any personal data you share with us, or any that we receive from other organisations. We aim to be clear when we collect your data and not use it in a way that you wouldn’t expect. In particular, we want you to know that we are not in the business of selling, renting or trading email lists with other companies and businesses for marketing purposes.

Developing a better understanding of our supporters through their personal data allows us to make better decisions and ultimately, helps us to reach our goal of helping people with Parkinson’s. In this Privacy Policy, we’ve provided detailed information about when and why we collect your personal information, how we use it and how we keep it secure.

How we collect your information

When you engage or give to us directly.
You may give us your information in order to sign up for one of our events, make a donation, fundraise for us, sign up to our communications via any of our websites, contact us directly, complete a survey, or subscribe to a mailing list. We collect this data only when you have given us your explicit consent. We are responsible for your data at all times.

When you give to us indirectly
Your information may be shared with us by independent event organisers or fundraising sites like Better Now or Virgin Money Giving. These independent third parties will only do so when you have indicated that you wish to support us and with your consent. You should check their Privacy Policies when you provide your information to understand fully how they will process your data.

Through third-party organisations
You may have provided consent to a company or other organisation to share your data with third parties, including charities.

Social media
Depending on your settings or the privacy policies for social media and messaging services like Facebook, WhatsApp, Twitter or LinkedIn, you might give us your consent to access information from those accounts or services once you choose to follow a Parkinson’s Life account.

Information available publicly
This may include information found in places such as Companies House, the Charity Commission and information that has been published in articles/newspapers.

When you use our websites
Like most websites, we use “cookies” to help us make our site – and the way you use it – better. Cookies mean that a website will remember you. They are small text files that sites transfer to your computer (or phone or tablet). They make interacting with a website faster and easier – for example by automatically filling your name and address in text fields. There are more details about this in our Cookie Policy below.

The information we collect

Personal data

Personal data is any information that can be used to identify you. For example, it can include information such as your name, date of birth, email address, postal address, telephone number and credit/debit card details, as well as information relating to your health or personal circumstances. We use this data to provide you with the services, products or information you asked for. We will hold this information until you request that we update or delete it.

Special category data

Data protection law recognises that certain categories of personal information are more sensitive. This is known as special categories and covers the processing of personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade union membership, and the processing of genetic data, biometric data for the purpose of uniquely identifying a natural person, data concerning health or data concerning a natural person’s sex life or sexual orientation shall be prohibited. We would only collect sensitive personal information where there is a clear need to do so such as participation in a challenge event, to ascertain what services are relevant to you or to cater other support to you. Before collecting any sensitive personal information from you we will always make it clear to you what sensitive personal data we are collecting and why. We will also ask for your consent to store and retain this data.

Cookies
Cookies are small pieces of text stored as a file on the computer’s hard drive. They are used by your browser and by most websites to help personalise or improve your web experience.They are not computer programmes, and they cannot be executed as code. They cannot be used to disseminate viruses or access the hard drives – a cookie cannot read other information saved on the hard drive, or get a user’s personal data. They only contain and transfer to the web server as much information as the users themselves have disclosed to a certain website. If you wish to restrict or block the cookies which are set by our websites, or indeed any other website, you can do this through your browser settings. Please be aware that restricting cookies may affect some of the functionality of our site, although the majority of the site will still be accessible to you.

The Help menu on the menu bar of most browsers will tell you how to prevent your browser from accepting new cookies, how to have the browser notify you when you receive a new cookie and how to disable cookies altogether. Additionally, you can disable or delete similar data used by browser add-ons, such as Flash cookies, by changing the add-on’s settings or visiting the website of its manufacturer. You can find more information about deleting and controlling cookies from the AboutCookies.org website.

We will not use cookies to collect personally identifiable information about you. However, in order to provide services to you within our website, it is necessary to gather information that will enable the site to personalise, improve and to operate such services. In connection with certain aspects of these services, we may request, collect and/or display some of your personal Information. This will only be collected with your explicit consent.

Google AnalyticsWe use Google Analytics, a web analytics service provided by Google, Inc. Google Analytics sets a cookie in order to evaluate your use of the Site and compile reports for us on activity to help us understand how visitors engage with the site and track visitor interactions. Google Analytics collects information anonymously and without identifying individual visitors. We do not make, and do not allow Google to make, any attempt to find out the identities of those visiting our website.

Google stores the information collected by the cookie on servers in the US. Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google’s behalf. Google will not associate your IP address with any other data held by Google. By accessing our website, you consent to the processing of data about you by Google in the manner and for the purposes set out above. Google Analytics uses its own cookie to store information, such as what time the current visit occurred, whether the visitor has been to the site before, and what site referred the visitor to the web page. To disable this type of cookie, some browsers will indicate when a cookie is being sent and allow you to decline cookies on a case-by-case basis. In addition to declining cookies, you can also install the Google Analytics Opt-out Add-on in your browser, which prevents Google Analytics from collecting information about your website visits. Learn more about the Google Analytics Opt-out Browser Add-on and other Google Analytics privacy information. Learn more about how Google Analytics uses cookies.

Mailing listsAs part of the registration process for our weekly e-newsletter, we collect personal information. We use that information to tell you about stuff you’ve asked us to tell you about; to contact you if we need to obtain or provide additional information; and to check every now and then that you’re happy and satisfied. We don’t share this data with any other organisations or businesses. We use a third-party provider, MailChimp, to deliver our newsletter, and a private database Insightly to store data. We gather statistics around email opening and clicks to help us monitor and improve our e-newsletter. For more information, please see MailChimp’s privacy notice and Insightly’s privacy statement. You can unsubscribe to our general mailings at any time of the day or night by clicking the unsubscribe link at the bottom of any of our emails or by emailing us directly at editor@parkinsonslife.eu. We will hold this information until you request that we update or delete it.

Parkinson’s Life surveysWe will occasionally carry out research surveys with the aim of collecting Parkinson’s-related quality of life information to support our aims and objectives – to improve the lives of people with Parkinson’s, their families and carers. We will never ask for personal information that can be used to identify you. We may sometimes ask for an email address and name solely for the purpose of facilitating you to access the survey. This information will not be sold, given away or used for any other purpose other than facilitating your access to the survey. We may sometimes link to surveys being carried out by third parties. We do not have control over whether these survey sites will collect or use personal information.

Parkinson’s Life sharing toolsWe use a number of social media tools in the form of ‘share’ buttons to enable users of the site to easily share articles with their friends through a number of popular social networks. As a result, when you visit a page with content embedded or social media buttons and content, you may be presented with cookies from these websites. These websites are not controlled by us. By using these links, you accept the privacy policies of these websites. These sites may set a cookie when you are also logged in to their service. Data may then be collected by these companies that enables them to display adverts on other sites that they think are relevant to your interests. If you do not use such platforms then our Site will not place these cookies on your device.

YouTube cookiesWe sometimes embed video content from our official YouTube channel using YouTube’s privacy-enhanced mode. This mode may set cookies on your computer once you click on the YouTube video player, but YouTube will not store personally-identifiable cookie information for playbacks of embedded videos using the privacy-enhanced mode. Learn more about embedding videos from YouTube. Learn more about YouTube’s Privacy Policy.

BitlyWe will often post links to the EPDA and external websites through our Facebook and Twitter profiles. These posts will sometimes use the Bitly utility to create shortened uniform resource locators (“URLs” or web addresses). Bitly collects information about accesses (such as clicks) of every shortened URL created through the Services. This information includes, but is not limited to: (i) the IP address and physical location of the devices accessing the shortened URL; (ii) the referring websites or services; (iii) the time and date of each access; and (iv) information about sharing of the shortened URL on Third Party Services such as Twitter and Facebook. These metrics and analytics are used by Bitly and its partners to improve their websites and services by, for example, providing value-added features.

We ensure that there are appropriate technical controls in place to protect your personal details. We undertake regular reviews of who has access to information that we hold to ensure that your information is only accessible by the appropriate Parkinson’s Life team member(s).

We may occasionally use external companies to collect or process personal data on our behalf. On these occasions, we will undertake comprehensive checks on these companies before we work with them, and put a contract in place that sets out our expectations and requirements, especially regarding how they manage the personal data they have collected or have access to.

Some of our suppliers run their operations outside the European Economic Area (EEA). Although they may not be subject to the same data protection laws as companies based in the UK, we will take steps to make sure they provide an adequate level of protection in accordance with UK data protection law. By submitting your personal information to us you agree to this transfer, storing or processing at a location outside the EEA. We will only ever share your data in other circumstances if we have your explicit and informed consent.

Keeping your information up to date

Where possible we use publicly available sources to keep your records up to date; but we would be grateful if you let us know if / when your contact details change.

Your rights concerning your information

You have a right to ask us to stop processing your personal data, and if it’s not necessary for the purpose you provided it to us for (e.g. processing your donation or registering you for an event) we will do so.

You have a right to ask for a copy of the information we hold about you, and will endeavour to provide you with information within 10 working days from your request. If there are any discrepancies in the information we provide, please let us know and we will correct them. If you want to access your information, please contact editor@parkinsonslife.eu, and we will work with you to verify your identity before providing the information.

If you have any questions, or wish to make a complaint, please contact editor@parkinsonslife.eu. You can also access further information from the Information Commissioner’s Office here.

Changes to this Policy

We may change this Privacy Policy from time to time. If we make any significant changes in the way we treat your personal information we will make this clear on this Privacy Policy page or by contacting you directly. If you have any questions, comments or suggestions, please let us know by post – Parkinson’s Life, 12 Links Yard, Spelman Street, London E1 5LX, or email editor@parkinsonslife.eu.

Additional cookie notes

Google Analytics cookies

Name

Expires

Purpose

ASP.NET_SessionId

This cookie is deleted when browser is closed.

The ASP.NET Session ID is a unique session identifier that is automatically created when a session starts for a given visitor. It is a randomly generated number and contains no personal information.

_utma

2 years

Google Analytics randomly generated number

_utmb

29 minutes

We use Google Analytics to monitor traffic levels, search queries and visits to this website.

_utmc

This cookie is deleted when browser is closed.

Google Analytics stores IP address anonymously on its servers in the US, and neither CIVIC or Google associate your IP address with any personally identifiable information.

_utmz

6 months

These cookies enable Google to determine whether you are a return visitor to the site, and to track the pages that you visit during your session.

Cookie name

Expiration time

Description

_ga

2 years

Used to distinguish users.

_gat

10 minutes

A system cookie for Google Analytics

__utma

2 years from set/update

Used to distinguish users and sessions. The cookie is created when the javascript library executes and no existing __utma cookies exists. The cookie is updated every time data is sent to Google Analytics.

__utmz

6 months from set/update

Stores the traffic source or campaign that explains how the user reached your site. The cookie is created when the javascript library executes and is updated every time data is sent to Google Analytics.

Other cookies

Name

Source

Expires

Description

__atuvc & __atuvs

Addthis (social sharing)

2 years

AddThis: The __atuvc cookie is created and read by the AddThis social sharing site JavaScript on the client side in order to make sure the user sees the updated count if they share a page and return to it before our share count cache is updated. No data from that cookie is sent back to AddThis and removing it when disabling cookies would cause unexpected behaviour for users. More information can be found at www.addthis.com/privacy/privacy-policy.

UMB_UCONTEXT & UMB_UPDCHK

epda.eu.com

1 day and 7 days respectively

These cookies are only for users logged into the site administration area.

XSRF-TOKEN & XSRF-V

epda.eu.com

This cookie is deleted when browser is closed

These cookies are set from the administration login area as a security measure.

IN THE NEWS

A study published in the ‘Journal of Clinical Investigation’ has suggested mechanisms that lead to Parkinson’s in adulthood, may begin much earlier than previously thought. The study, carried out by Northwestern University, Illinois, US, researched movement disorder spinocerebellar ataxia type 1 by genetically engineering a mouse to mirror the human disease. Researchers found that altering circuity in the cerebellum – an area of the brain that controls movements – set the stage for later susceptibility to neurological disease. Professor Puneet Opal, who worked on the study, said: “This is the first discovery of alterations in an adult-onset spinocerebellar disorder that stems from such early developmental processes. “This may well be generalisable to a whole host of other diseases, including Alzheimer’s disease, Huntington’s disease, Parkinson’s disease and amyotrophic lateral sclerosis.”

Global Kinetics receives vital funding

Australian-based health company Global Kinetics has received a $AUS 7.75 million investment from the Australian Federal Government’s Biomedical Translation Fund. The investment will be used to commercialise its Parkinson’s KinetiGraph – a smartwatch-style device that continually tracks the involuntary movements of those living with the condition. In addition to the sum from the Australian government, Global Kinetics also announced they are to receive a grant from The Michael J Fox Foundation, Shake It Up Australia Foundation and Parkinson’s Victoria. Mark Frasier, senior vice president of research programmes at The Michael J Fox Foundation, said: “The experience of Parkinson’s varies day-to-day, hour-to-hour. An objective tool, such as the wearable PKG technology, that passively collects data on the experience of Parkinson’s disease could give patients and their doctors greater insight to calibrate treatment plans and improve outcomes.”

Smartphone app detects severity of Parkinson’s symptoms

A smartphone app– created by researchers from Johns Hopkins University, the University of Rochester Medical Centre and Aston University – can detect the severity of symptoms in people with Parkinson’s, according to a recent study. The study, which appeared in medical journal ‘JAMA’, found that the HopkinsPD app generated severity score levels which strongly correlated with standard movement tests given by physicians. HopkinsPD is expected to help medical professionals analyse Parkinson’s symptoms. Dr Ray Dorsey, neurologist at the University of Rochester, said: “Until these types of studies, we had very limited data on how people function on Saturdays and Sundays because patients don’t come to the clinic. “We also had very limited data about how people with Parkinson’s do at two o’clock in the morning or 11 o’clock at night because, unless they’re hospitalised, they’re generally not being seen in clinics at those times.”